Today and tomorrow I get yet another round of IVIG infusions, the same treatment that continually weakens me each month and is failing me miserably. It hasn’t helped the neuropathy one bit in fact it seems to agitate my body somehow and I often leave the hospital weaker than when I first came in for IVIG infusions. I personally don’t understand the total 180 with this medication going from being helpful to very painful and weakening me to the point of being confined to a wheelchair.
I am honestly sick of the treatment and you’d think after it failing 6 or 7 times they’d stop poisoning my body but it seems my rheumatologist thinks my body will just all of sudden change it’s mind and that I’ll be ok. That’s just an absolutely ridiculous thought and I am quite fearful that they will keep running this every month just because they no longer know how exactly to handle my case. I wish I knew when this would stop or when they’d consider it a failed treatment because I currently suffer monthly and it takes weeks to recover. In fact typically by the next treatment I’m finally recovered, but then they hit me with it again and boom my body is knocked right back down. Honestly the immediate side effect are even worse than any chemotherapy I’ve gone through so I consider taking IVIG to be a serious treatment. It should in fact be taken more seriously than it currently is at least due to how frequently the treatment occurs and how weak it can make an individual. From how it was described to me I could swear one could work with this treatment, but now that I’ve had it I highly doubt it. Perhaps one could work from home but geez with the side effects I have from it that certainly would be a challenge.
Anyway enough complaining about IVIG I’m currently on bottle 2 out of 6 at about noon and my limbs are already in sever pain. I feel as if I’ve torn muscles in both calves and my arms feel like they’re being weighed down as if someone has strapped lead weights to my forearm. It’s a terrible feeling and even though I only slept a few hours last night and I had Benadryl I still cannot fall asleep due to the muscle pain this stuff puts me in. It’s supposed to halt my neuropathy yet I feel as if a legion of fire ants are chewing away at my joints and muscles. In fact I feel as if I have no muscles left at all all that’s left is pain. That’s a feeling nobody wants to have certainly not one you want to deal with for 2 days at a time for over 6 hours per infusion typically 8-10 instead. That’s another thing these infusions really eat up your day and when you can’t get phone service and you’re trying to run a business. Missing two days a month when trying to start up can really hurt you financially especially if you are expecting any important phone calls. I’m sure those of you who own your own small businesses or work for one know that it’s a 24/7 job for the owner typically. Anyways this is far from the more interesting portion of my day you see when I wrote this paragraph I thought my day was going well, little did I know complications were soon to come.
You see I was sitting in my chair when I started to sweat I thought to myself crap I’m having a slight fever same reaction as last time I should warn the nurse so I did so. Remember it’s crucial when getting an infusion or transfusion to let the nurse in charge know your status, if you feel odd at ALL report it. So they took my vitals and luckily they were fine so I quietly went back to reading my kindle feeling uncomfortable like I needed some O2 which I am supposed to be on 24/7 now but wasn’t on during my infusion. The infusion nurse then lowered the infusion rate and hung the second bottle out of 6 total of my IVIG or antibodies. Unfortunately within half an hour of the second bottle being hund I felt a stabbing sensation in my heart which was constant, throbbing, and moving leftward, my left shoulder was in agony. So I once again called the nurse over and she immediately took my vitals.
My vitals were now an alarming 185/110 or so which triggered a level 2 rapid response team to come running with everything needed to get me admitted to the ER. See I had a hospital wristband already but it was for my outpatient infusion so they added a blue band to my left arm to show I no belonged in the ER. As II ached and moaned for an hour the pain slowly subsided from 10/10 icicle through the heart stabbing sensation to a more throbbing out of breath feeling for which they had me take an X-ray and CT scan. Little did I know that once again things were about to change in my life, when I went in for that scan they were looking for issues with my heart. But what they found certainly wasn’t heart related fortunately. Their findings were confirmed in an x-ray, CT scan, and a CT of the arteries.
What they’d in fact found were nodules in my lungs again and from what I hear possibly larger than last time! I don’t yet know how many exactly but we know for sure this is Churg Strauss Syndrome/EGPA related which is scary. It’s scary in general but also because my bladder is under attack by something as well and that’s why I am having surgery on Monday to have a portion removed for biopsy and to avoid permanent damage to my organs. It could be cancer, could be a cystic hemorrhage, or my vasculitis but the last of those is the most unlikely according to my urologist, but then again he has never ever seen a patient with my illness like most doctors I see. The whole reason they ever even scoped my bladder is because I’ve been urinating lots of blood and blood clots, in fact I once urinated so much blood that I passed out and hit my head on the tile floor. I personally just hope the surgery goes well and that we can figure out more about the nodules in my lungs perhaps biopsy one of them this time around.I could truly use the definite diagnosis to help me in getting into clinical trials.
So back to my ER trip there was a packed emergency room which is typical at our local hospital, I was very uncomfortable. You might be thinking why your heart was in severe pain you needed to go, and I would agree. However I should’ve been put in an isolation room since I’m a VERY compromised autoimmune patient that’s a fact, but instead they left me out there with all the transferable diseases and a lot of psych patients. My god these psych patients going through drug/ alcohol withdrawal and mental illnesses would not shut up the guys next to me kept yelling medical malpractice and belonged in the psych ward along with the elderly woman who kept shouting DOCTOR I NEED A DOCTOR. Not to mention people who shouldn’t have even been there, much like the lady whose cat died and was treated in Mount Sinai ER before me whilst I was nearly having a stroke my BP was WELL over 200/120 and I was being ignored while this psycho was being taken care of when what she really needs is a good psychologist!
I am so sick of being treated slowly and inefficiently in hospital ER’s they obviously don’t work and the model needs changing for sure. Why? When was the last time you went into an ER with a serious problem and got out in less than 8 hours? Never for me not even for a broken finger or two, they always take forever and the ER nurses pay way more attention to the psych patients and those being difficult than they do to us good patients who wait our turn. For christ sakes just call security on these people and send them to psych immediately! We good patients are cooperative for a reason we truly need you help medical world, that’s why we are kind and polite and quiet. Not banging on the walls and getting out of the bed and yelling constantly. I’d never act like that so why pay so much attention to these obnoxious and grimy humans that don’t deserve treatment if they don’t have manners. And don’t tell me it’s hard to have manners when you’re in pain I suffer some of the worst pain known to man every day of my life and guess what I don’t often snap at anyone. It’s rare that I verbally abuse anyone simply due to pain no matter how bad. I have manners during cluster headaches, migraines, neuropathy flares, and vasculitis flares.
I am also sick of seeing children on TV with these 1 in 3,000 “rare diseases” that isn’t at all very rare. My disease is 1 in 1.5 million or so that’s just a little bit more rare than what I see all over TV just because it’s a kid or someone walking with new technology. Well my story may not be heartwarming it’s sad because we get no media attention, especially when my disease is well over 500x’s what they would call rare. I’m sorry if that seems selfish maybe it is but I don’t care if it’s me or anyone with CSS the point is vasculitis in general needs more awareness. I’ve said this before but I’m sick of people asking what type of cancer I have when I mention I’ve had chemotherapy. People need to know us vasculitis patient are in a far more grim situation than most cancer patients, they have hope for a cure just to remove the cancer or get remission. We vasculitis patients ONLY have remission yet you don’t see the NFL wearing ribbons for us they do it for veterans and for breast cancer which is overly donated to and us vasculitis patients are left to watch as cancer NPO executives make millions of dollars off of these so called donations and doing good. The fact is entire families make their livings millions of dollars worth off of cancer, that’s the reality of it. Not all cancer related organizations are bad but many take a portion of that money and over pay their executives. You don’t see that with other incurable diseases because they don’t get as much media attention or as much attention by the NIH which shows how half assed our medical system is.
Sorry for the long rant today but I am beat after spending yesterday in the ER and I am not looking forward to this bladder surgery on Monday. I know some of this post may seem selfish but so be it I want to live and if any of you have media connections please contact me and help those of us with CSS and migraine/cluster headache. I will make sure that we do get the necessary attention eventually I’m just going through a big battle with my vasculitis right now. I suppose I should take care of myself so that I’ll be well enough to do so when the time comes. Thank you for reading and please share this article around I want more people to know the difference between cancer and vasculitis.